Virtual Communities

RareConnect: Connecting Rare Disease Patients
Globally

A safe, easy to use platform where
rare disease patients, families and patient organisations can
develop online communities and conversations across continents and
languages. RareConnect partners with the world's leading rare
disease patient groups to offer global online communities allowing
people to connect around issues which affect them while living with
a rare disease.

RareShare

Even though there are 7,000 known
rare conditions, many of the 300 million affected patients around
the globe feel alone. RareShare was founded in 2008 to give these
people and their loved ones a sense of community; a place to
sympathise, celebrate, and share their experiences and expertise,
together.

MyGene2: Share, Unite and Discover

MyGene2 is a portal through which families with rare genetic
conditions who are interested in sharing their health and genetic
information can connect with other families, clinicians, and
researchers. The genetic cause of most rare conditions is unknown
and as a result, most families who undergo exome sequencing or
whole genome sequencing do not receive a diagnosis. By sharing
information through MyGene2, a family can help and even participate
in the discovery of new genetic conditions and the genes underlying
these conditions.

Families with rare genetic conditions may use MyGene2 to search
for and contact other families who have the same condition or
mutations in the same gene in order to share information and offer
support. Families have the option to make the information they
submit to MyGene2 available to anyone visiting the site (i.e.,
public) or available to only registered users who have also
contributed data to MyGene2. Families also have the choice of
whether or not they want to be contacted by clinicians and
researchers or other families.

GenomeConnect: The ClinGen Patient Portal

GenomeConnect
is a patient portal, or registry, that is working to build the
knowledge base about genetics and health that will allow
researchers and doctors to study the impact of genetic variation on
health conditions, which is key to the development of new
treatments and therapies. A recently added new feature allows
participants to connect with one another to find others with a
similar diagnosis, age, gender or geography.